Danny drove fine. He used
his mirrors, stopped with impunity at stop signs, watched his speed, and aced
the three-point turn. Danny did so well he hoped Bob Weinheimer was impressed
enough to say, Oh, we can skip the parallel parking, Danny. You’re obviously
a skilled driver. Bob Weinheimer didn’t say that. What he did say was, “Pull
up next to that car across the street from the library and park behind it.” Bob
Weinheimer probably chose that particular street, Second Street, because it was
about as wide as the Mississippi River. Danny pulled up next to the front car.
There was about ten spaces empty behind that car before the next parked car. Piece
of cake. Just stay calm.
Danny went through the
checklist in his head. Ok, use your mirrors. Don’t forget to signal. Look
for traffic. Turn your head and cough. No! Just turn your head. Oh God…. Danny’s
calm was leaking out of him. He pulled back even with the other car’s rear
bumper and turned the wheel sharply right, then when he was far enough in, he
turned the other direction, continued to back in, and then straightened the car
out. Perfect!
Then, Danny looked in his right
mirror. He was probably three feet from the curb, not exactly within the margin
of error. Danny actually thought that’s as close as I’m going to get. He
looked at Bob Weinheimer, who calmly said, “Try again, Danny.” He pulled up next to the other car and
repeated the process. He didn’t even need to look in his mirror this time to
know he was a mile away again.
Then, inexplicably, he didn’t
pull up and try again. He melted down, out of anxiety and embarrassment, and
just snaked back and forth behind the original car, like a gigantic metallic,
mechanical earthworm. The panicked Danny
was at least six car lengths behind the original car when Bob Weinheimer, very
calmly, asked him, “Danny, what are you doing?” Somehow, Weinheimer gave Danny the
absolute minimum passing grade of 65, while also making a mental note to get
off the road if he saw Danny on it.
The Orange and Blue Review,
Liverpool’s school newspaper, was looking for volunteers and Danny signed up.
He soon discovered he was much better at writing than parallel parking, and
dove right in covering sports. Danny quickly became Page Two editor. Page One
belonged to underclassman Greg Kot, who deserved it. Greg was a preternaturally
gifted writer who became the Chicago Tribune’s music editor. Danny wasn’t in
Kot’s league but established himself as the paper’s main humor source.
The end of the semester loomed,
and with it, graduation. Most of the other kids had college plans, trekking through
Europe plans, or some plans, Danny had only dread. He loved high school.
He had friends, and he had the Orange and Blue Review. Most important, he had
structure and stability--at home, he had neither. The fridge was usually empty,.
June was running with her friends, nowhere to be found. Helen alternated between rampages and sleep
marathons. Ann slept late, worked later, and closed the bars after that. And
the rent was late, as usual. The Martini family structure was crumbling, even
more than normal, and Danny dreaded what came next. He actually toyed with
joining the military. He loved the structure it offered; when to wake
up, when to go to bed, and what to do in-between. Danny would have made a terrible
soldier, though. He would have washed out quickly, and knew it.
Final exams ended the year;
Danny aced them. He ended up with a 91 average, good for number 41 out of 715
graduating students, and won a New York State Regents Scholarship that completely
went to waste. On graduation day, he
proudly wore his cap and gown, stood in the auditorium with his classmates, and
walked up to get his diploma. Afterwards, most of his classmates were headed to
parties and summer vacations and then college. Danny went to a party, at his
friend Dean Bowman’s house, and then he stayed there; he no longer had a home
to return to. The Martinis were evicted and vacated the apartment that day, and
everyone went their separate ways.
2002: Testing
Danny
had more frequent and more serious infections as 2001 crawled into 2002. His
friend Bill Huntley passed away in December. Danny spoke to Bill one last time
on the phone as his friend lay dying, a short and fraught call that was a
terrible way to say goodbye. Danny was unprepared for the emotional enormity
of having, and knowing he was having, a literal last conversation with a
dying person. Danny knew he would never speak to Bill again and wanted to say
something soothing, and profound, and meaningful. Instead, the last thing Danny
said to Bill was, “What (medicine) do they have you on?”
Bill
gasped for breath as he tried to recall, then said, “Oh, I don’t know, Danny.
It’s so hard to talk now. I have to go,” and then his friend hung up the phone.
And that was that. Bill was just forty-five. Just a kid, really.
Danny
came home for lunch one cold and snowy February day, spent. Simply clearing the
snow from his car left him winded and coughing uncontrollably. Any excessive
aerobic activity, really any aerobic activity, had that effect. A flight
of stairs to Danny looked like Mount Everest. He showed up for a dentist appointment around
that time and discovered the elevators were out of order in the high-rise building.
His dentist’s seventeenth floor office might as well have been Mount
Everest. Danny just went back home, defeated.
On that dreary day he slowly ate his lunch and contemplated his mortality. His life had gotten smaller and smaller, and he was in rough shape. His lungs felt like a bald tire that was in danger of having a blowout and that would be that. Danny finished his sandwich and started brushing his teeth when the phone rang. He almost let it go to the machine, but something told him to pick it up. Tracy Frisch, the pre-lung transplant coordinator at Cleveland, was on the other end. Danny hadn’t committed to going on the transplant list; like Bill, he just wanted his lungs to work. Bill’s death showed the folly of that thinking. The phone call that ensued was the most important conversation Danny ever had. Tracy Frisch saved his life that day.
The previous summer, Danny was
in Ohio visiting Steve and his wife Diane. Diane and Danny were at the grocery
store where Danny spotted a frail elderly woman, nasal cannula in her nostrils,
rolling an oxygen tank behind her. That tank and the woman were like conjoined
twins, essentially inseparable. Danny stole a furtive glance at the woman and
then whispered to Diane, “I will never never never never use one of
those! I’ll die first!” Diane stayed silent. Her opinion didn’t matter, and now
wasn’t the time, anyway, because Danny wouldn’t have listened. But Diane
thought about her grandfather, who lived the last five difficult years of his
life tethered to oxygen. She knew that Danny
had no choice but to go on oxygen if he wanted to live long enough to get
a transplant.
And Danny secretly knew it, too. That frail
elderly woman was Future Danny.
Tracy Frisch started talking,
and there was certainty in her voice, and urgency. “Danny, it’s time to begin
your screening to determine eligibility for the transplant list, and the sooner
the better.” She paused. “One more
thing,” she said, “You need to start using portable oxygen.”
“No, no, no,” he started to
say, but Tracy, undaunted, kept talking.
She spoke without coming up for
air, in a sort of filibuster. “Your oximetry tests showed us that your oxygen
concentration levels are 93% at rest and below 90% with exertion” she said, “Those
levels put a strain on your whole body. Every cell, every tissue in your body,
needs a constant supply of O2 to function properly. The first thing EMTs check
after an accident, Danny, is ‘is the patient breathing?,’ even before checking
for a pulse. Supplemental oxygen will ease the strain on your system. The rest
of your organs, your heart, suffer without the proper levels. We need to keep
you as healthy as possible before the transplant, Danny,” Tracy said, and
added, “Assuming you want to be listed.” Here she finally paused, and then she said,
“Do you?”
“Yes,” said Danny, in almost a
whisper. Then, louder, “Yes, yeah, yeah, I do. I don’t want to go down without
a fight.”
Danny could almost hear Tracy
smile through the phone. “I’m glad, so glad to hear that, Danny. And will you
commit to using oxygen? Did I get my point across well enough?” Tracy asked
him.
“Yes, yes, I will. I promise.
But that doesn’t mean I like it,” Danny said.
Tracy laughed, a relieved
laugh. “Hell, I don’t care if you like it. I don’t care if you like me!
Make those arrangements today, okay?” He promised he would, and they hung up. Tracy
was drenched in sweat.
You can’t make someone
do something, but you can make them want to. That was one of the central
ideas espoused in Dale Carnegie’s best-selling book How to Win Friends and
Influence People, which Danny read, years ago. Instead of browbeating or
threatening Danny, Tracy made him want to do the one thing that would
buy him some valuable time.
Danny kept his word. He called Oxicare,
the medical supply company and arranged for oxygen delivery. A couple of days later, they delivered a
liquid oxygen tank that looked like a cross between a beer keg and C3PO; a
large, roundish device supplied the portable device Danny carried outside the
house. He soon found that unreliable, and switched to the more conventional,
but heavier, portable canisters. Each supplied
a few hours of oxygen and were, at nine pounds, relatively lightweight. At
first. Later, as Danny got weaker, they got heavier.
For home use, Oxicare brought a
rolling compressor called a concentrator, which stood about two feet tall and weighed
about 45 pounds, ran off electricity and was to be used whenever Danny was
home. It took in room air, concentrated the oxygen, and delivered it via a long
tube and cannula to Danny’s nose. The Oxicare delivery man told Danny, “Just
plug it in next to your bed. After a few minutes you won’t even hear it,” which
turned out to be hilariously bad advice. After he slept just one night with the
grinding and wheezing machine, he decided a leaf blower would be quieter. Danny
moved the concentrator to a spare bedroom in his house and closed the door. A fifty-foot
length of tubing reached not only into his first-floor bedroom but, just
barely, up the steps and to the shower. Danny was fortunate he could isolate
the concentrator. He wondered what people did in more cramped conditions. Slept
poorly, or went mad, he guessed.
Danny made his peace with the
concentrator. Heading out into the world with the tank was Danny’s biggest
problem. People would stare, he knew that. People always stared at different.
Danny had no intention of breaking his promise to Tracy, but carrying the tank
presented a physical, mental, and even emotional challenge. The tank was
heavier than he expected, and Danny felt old and infirm. Did people pity
him or was he just self-conscious? He decided to just put on a happy face when
he wore the tank, hoping to give the impression it was no big deal. But it was
a big deal, a huge, gigantic deal.
His coworkers at Colozzi’s
initially ignored the “canister in the room,” and waited for Danny to broach
the subject. “Look, I’m Lloyd Bridges from ‘Sea Hunt’!” he said, a lame joke
even if it wasn’t a sixty year old reference. Customers mostly ignored the
monkey (so to speak) on his back. Danny didn’t appear to scare anyone away, and
he apparently got zero “pity” sales, thank God. He wanted understanding, not
pity. Danny looked quite unnatural, with the tank, his cannula, and his
antibiotic PIIC line. He looked and felt like Pinocchio, all tied down with strings.
Herbert Bradley was Danny’s new
Oxicare visiting nurse. He came about once a week to inspect Danny’s PIIC line.
Herbert was a light-skinned black guy about Danny’s height and only a little
heavier, who vaguely resembled Gregory Hines. He was a Bronx native who had shed his accent
but not his big city street-smarts. He was a bright guy with an ebullient
personality, on Danny’s wavelength. Herbert
regaled Danny with stories from his rough, juvenile delinquent Bronx childhood,
interspersed with tales of his latest schoolboy crush (Herbert was fifty going
on sixteen.) Herbert was not only a visiting nurse, he was also a visiting
jukebox. He broke into song whenever the mood struck him, which was usually. When
that happened, he looked Danny in the eye while he sang not one, not two, but
sometimes three verses. There was nothing romantic about it, but it was
unusual and unnerving. Between the stories and the serenading, and because he
wasn’t a multitasker, Herbert’s half-hour nurse’s visit frequently stretched
into an hour-and-a-half marathon. Danny tried to move him along with limited
success. Danny liked the guy- he was so interesting and funny (and knew
a lot of Bob Dylan songs). He just wished Herbert was a little less
entertaining.
Danny and April set out for
Cleveland on a blustery, cold November day. Though the calendar said “autumn,”
people from Syracuse knew better. Winter unofficially started on November first
and lasted until April? May? They hit moderate
lake-effect snow in Buffalo, heavier snow through Erie and well into Cleveland
before they finally caught a little sun. The drive, grueling enough in the
summer, was a wintertime slog.
Danny was slated for an extensive
battery of tests as a precursor to being listed for a transplant. They poked him
and prodded him, and he gave up what seemed like a gallon of blood. They looked
for everything from hepatitis to HIV, syphilis to toxoplasmosis. Danny’s blood
type, determined by the common ABO test, and tissue typing were done. Both were
important. Even if the donor’s blood matched, if the tissue types were
incompatible, the transplant was a no-go. Donor lungs, and all solid organs,
were such a precious and rare commodity. None could be wasted.
Danny had a chest X-Ray that calculated
the size and shape of his lungs. If the lungs don’t fit, you must fergit, Johnnie
Cochran would say; Danny kept that one to himself, lest they mark him down as
“too dopey” for a transplant. A CT scan
produced a more detailed image of his diseased lungs and showed how much damage
they had suffered; answer: a lot. Danny had an EKG; an echocardiogram; and a
Cardiac catheterization. During this last test, Danny asked the doctor “Is
there such a thing as heart cancer?”
The doc replied, “Yes, but it’s very rare.”
“Why is that?” Danny asked him.
“If I knew that I would win a
Nobel Prize,” the doctor replied. They both laughed.
Next,
a respiratory therapist put Danny’s beat-up lungs to the test. She did pulmonary
function tests which measured the capacity and general function of his lungs. Danny
did those tests at Upstate for years. He was tested each visit and they kept
track of any changes. Danny stood in front of the spirometer and put on nose
clips, then breathed in as fully and deeply as he could, then, while cheered on
by the RRT, blew out as quickly and fully as he could. The two key
measurements were forced vital capacity, (FVC) the volume of air exhaled
quickly and forcefully in one breath; and forced expiratory volume in one
second (FEV1), the volume in the first second. Despite his best efforts, his PFTs
continued their irreversible decline.
Next
was the six-minute walk, where Danny pushed himself as hard as he could for six
minutes. He weaved through the transplant clinic corridor, dodging doctors,
other walkers, and medical equipment in a kind of crazy obstacle course. Danny always went full bore, and the staff
appreciated it. Putting forth that kind of effort showed the transplant staff he
was a fighter, one of many critical factors that helped determine when and whether
he’d get listed. The exercise was done without the use of portable oxygen, and at the end of the walk,
Danny slumped in a chair, wiped out. The nurse checked Danny’s oximetry; as
expected, it was low, eighty-six. A level that couldn’t be appreciated or
experienced by most healthy people. His reward for his gritty effort was a big
hit of sweet, life-giving oxygen from the wall supply. No drug Danny ever took in
his wayward youth matched the heady feeling of those six liters of O2.
April looked sympathetically at
Danny. She saw how wiped out he was, and then revived by artificial oxygen. “What
does that feel like, at the bottom? You know, how you were when you sat down. I’ve
always wondered,” she asked. Healthy people like April who effortlessly fill
their lungs to capacity without a thought, can’t understand it. Danny had her
do a little test of her own.
“Try this,” he said, “Hold your
breath for a minute, or longer, as long as you can until you don’t think you
can go any further, until you feel like you have to breathe. You’ll start to
feel light-headed and a little nauseated, even. Now you’re me. When I exert
myself, when I finish one of these six-minute walks, or climb stairs, or even have
an extended coughing fit. So hold it, hold it, hold it and when you can’t stand
it anymore, breathe.”
“I used to have breath-holding
contests with my sisters when we were kids,” April said. Most kids did, even
Danny, who always lost. She took a big breath and held it for well over a
minute, then her eyes got big as she looked at Danny. A couple of seconds later
she exhaled and breathed in, deeply, a couple of times. She started laughing. “Wow!
I haven’t done that since I was a little kid. I did forget what that
felt like, Danny,” April said in amazement, “That first breath, wow, wonderful!
What a head trip!”
“I can’t do that, ever,” Danny
said, “No matter how much I try to fill my lungs I can’t get that feeling
anymore. Even six liters doesn’t do it anymore.” Danny said, then waved April
off when she started getting overly sympathetic. “No. I’m fine. I was just
showing you why I need new lungs. I don’t want pity.”
April’s eyes blazed. “I don’t
pity you, Danny. I sympathize with you, yes, but not pity.”
“Ok, ok, sorry. I guess I’m
overly sensitive,” he said.
April
gave him a big, reassuring hug and a kiss. “I’m sorry too, Danny.”
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